Chinese Dementia

The Chinese Dementia Awareness and Intervention Project

Project Team
Nancy Emerson Lombardo, Ph.D.
Bei Wu, Ph.D.
Jennifer Hohnstein, BA

Elder Chinese Americans with dementia face cultural and linguistic barriers to receiving care within and outside of their own communities. Many Chinese-American families, and even some health care providers, view dementia as either a shameful mental illness, a part of normal aging or a punishment for past wrong doings committed by the family or individual. Language barriers exacerbate the stigma attached to dementia in the Chinese speaking community. The common word for dementia in Chinese is a very pejorative word for “crazy.”

According to the 1990 census and future projections, there is a need for better services for Chinese American persons with dementia living in the Boston area. Based on national prevalence rates, well over 400 Chinese-American persons with dementia are estimated to live in the Boston area. This number is expected to more than triple in the next 30 years. Contrasting the growing need for services and educational resources related to dementia within this community, dementia services are seriously deficient. In the Boston Area, for Chinese-American elders, there is insufficient housing, no available assisted living program, and only one space-limited nursing home with Cantonese/Mandarin-speaking staff.

In addition, the majority of family caregivers of Chinese elders with dementia had little knowledge about the disease, sought outside help with great reluctance, and often remained unaware of existing services. In 1998, the Greater Boston Chinese Golden Age Center (GBCGAC), the Wellesley Center for Research on Women, Midtown Health Care, Inc., and the Massachusetts Chapter of the Alzheimer’s Association created the “Chinese Dementia Awareness and Intervention Project” to address problems surrounding dementia care in the Chinese communities of Greater Boston area. Funded by the Boston Foundation and subsequently, by the E.H.A. Foundation, this community-based collaborative project focused on the following tasks:

• raise community and institution awareness and commitment to persons with dementia and their families
• enhance knowledge and skills of professional and family caregivers of persons with dementia
• increase the availability of culturally relevant educational and assessment materials
• increase access to existing services
• create culturally competent sustainable new services

The Chinese Dementia Awareness and Intervention Project, now complete, accomplished many tasks. It implemented a “train-the-trainer” Chinese Dementia Specialist Education Program (CDSEP), which trained 16 people from various agencies to become bilingual Dementia Specialists. As Dementia Specialists, they were trained to conduct presentations and in-services to share their skills with other families. Within ten months of completing the training program, CDSEP graduates helped over 70 families and participated in 76 workshops, presentations, or formal and informal discussions, reaching over 300 individuals.

A Chinese language dementia telephone Helpline for family and paid caregivers was created. The Helpline offers an immediate solution to people who need information about the process, treatments, and services associated with dementia. We estimate that 40-50 families were helped each year. The issues addressed ranged from home safety concerns to behavior counseling. To further educate the public and to publicize the Helpline, we expanded outreach efforts including radio programs, lectures and workshops on dementia and brain wellness. The team developed and distributed a bilingual Chinese-English brochure on signs and symptoms of dementia and compiled three libraries in GBCGAC branch offices of Chinese language materials on dementia and aging from around the world. The project further created a program of individualized family caregiver interventions. A trained Chinese-speaking social worker made home visits to help teach families skills for caring for their elders who have dementia as well as to offer them information about caregiving options and assistance in securing supportive services. She also offered counseling and emotional support as needed.

Through this project, we were able to identify and successfully serve a group of caregivers and persons with dementia, which probably would not have been identified and served in the main stream service system. The picture our report presents can provide valuable information for policy makers to acknowledge and extend services to underserved minorities, especially non English-speaking populations.

From this project we developed some recommendations for future efforts. While these are addressed to Chinese-American communities in Massachusetts, they can be applied to any Asian community.

1. Create, maintain and expand existing Chinese language telephone Helpline and individualized counseling, skills training and support system building services for Chinese-American family caregivers of persons with dementia.
2. Increase caregiving information available in Chinese language about dementia and dementia related services.
3. Adequately fund creation of complete continuum of care for Chinese-American persons with dementia and fill any gaps. Quality services include adequate training of staff about dementia care.
4. Raise public awareness through on-going publications, media outlets, and through workshops in senior housing and centers.
5. Raise health care and social service providers awareness through training or education courses, information dissemination, and request for cultural and linguistic appropriate services.

One key to the success of the project was that the community-based agency took the lead, with the academic institution and the mainstream agency playing the facilitative and supportive roles, with each of the three organizations learning from and empowering the other two.

Team members
Ruth Moy, Kun Chang, MSW, LCSW, Miranda Lee, MSW, Lili Mei

Wellesley Centers for Women
Nancy B. Emerson Lombardo, Ph.D., Bei Wu, Ph.D., Jennifer Hohnstein

Midtown Health Care
Nelson Wong, MSW

Alzheimer’s Association
Jim Wessler, Daniel O’Leary, Tanya Crews

Independent Consultants
Wee Lock Ooi, Dr. P.H. Pauline Belleville-Taylor, RN, CNS.